Today is treatment nine and we have just completely given up on robin being able to eat any more.The weekend was a night mare as the realisation set into his brain that everything he had been warned about was happening and it is not pleasant.Robin is having terrible trouble with nasal mucous congestion in the morning and spends 10 minutes blowing his nose. His mouth is completely gummed up and the radiologist gave him difflam yesterday which he finds a bit sharp but seems to be helping.He was told to discontinue all the biotene products i had got him which i thought a bit odd as they are for dry mouth not painful burnt mouth or am i wrong?He had bloods done yesterday and today we see the oncologist and the dietician (he has lost about 8 lbs this week )the taste problem you have all spoken about doesnt seem to have kicked in yet and he is still enjoying tea and beer. The neuralgia has disappeared altogether which is brilliant ,but he just wont cut back on the work!!!still,every day is a bonus so no complaining ,as we in the uk say onwards and upwards lol.Many thanks for the private messages i have received i appreciate them more than you can possibly know.
love

Liz
Robin seems a little ahead of schedule in the symptoms of treatment area. My taste buds didn't quit working until about 3 weeks into it. They won't start really worrying about his weight until he loses 20 lbs. Then they will start pushing for him to get a PEG tube. It doesn't sound like that will be able to not go there at his current weight loss. I lost over 61 lbs myself and still refused a PEG (which probably wasn't the brightest thing).

I used Biotene products throughout and was never told that - did they give you a reason?

Just got back from the hospital, and what a trauma that was.Robin has been prescribed oral morphine 2-4 hourly,asprin gargles,difflam mouthwash,fortisip,anti emetics and a barrow load of advice!!!!The damage to the inside of his mouth is severe apparently,and the docs consider working up to morphine is pointless .They want him on a maintenance regime now and have told him quite firmly that there is no point trying to pretend he is ok because they can see by the state of him he obviously isnt.He sat and glowered at the oncology registrar but i have spent hours explaining to him why they are doing what they are and why he needs to do as they say.I still know he wont touch the morphine until he has no choice.The nutritionist said to keep up with all biotene products except the mouthwash.So we will see how it goes for now its fortisip three times a day and build up in between and if he takes the morphine he may be able to eat a little.He still has his taste buds and is actually very hungry its just the burnsin his mouth that are so bad.So here we go again for a while .

Even with the morphine, he's still on pain management lite. Most of us were either on Duragesic(AKA Fentanyl) time release patches or Oxycontin for "long term" relief and morphine for "short term".

Being in pain will not enhance his experience nor facilitate faster healing. It can very well hinder his recovery.

He needs a "swish & spit" topical like "pink magic" also for the burns so he can eat.

I did it without a PEG but needed a lot of very careful pain management and still I suffered a lot and lost over 60 lbs. At the rate he is going he is going to have to have a PEG installed inevitably.

He has to get past the anger part and into acceptance and follow his medical professionals advice. Once you're on the rollar coaster you can't get off. This is going to get much worse before he turns the corner. Brace yourself.

When talking to him always use "I" statements and never use "you", "would", "should" or "could". He should be given options and the right to choose. Anger and pain, apparently, are the only things he has control over right now.

Speaking from a "been there-done that" perspective of a caregiver to a very stubborn husband, I have to disagree with Gary just a little. I think there are times when a Doctor OR A Caregiver must say "you Should or Must" do this to keep headed in the right direction. Caregivers can see most clearly [if we are actively engaged] what is going on daily. Cookie, you are Robin's best advocate, and as such, you will make him mad at times,and maybe make some of his medical team uncomfortable at times, but you've just got to be the strongest one. And I hope you can convince him to stop working for awhile to get the recovery time his body needs. Amy in OZ

Cookey, your husband sounds a little like me when I was going through radiation. I pride myself on being very stoic with pain and able to handle alot so the radiation trip wasn't any different for me........why would it be? I was still me during the entire thing and that is exactly what I told my husband and family and friends when they all took to bugging me to "stop working, sit at home and take it easy, do this, do that"........I needed to control my life at that point and I did. I eventually cut way back on my hours but it was MY decision when, I also took much less pain medication then they expected me to but it was MY decision. I had cancer, not a mental illness, I didn't suddenly revert to being a child because I was sick. Now, with that said, I'm not saying that some people can take it way to far and endanger their health, I'm sure that CAN and DOES happen. I just don't see that it's to that point yet with your husband. If he is given the time and the room and the feeling of control over his life, I bet he will make good choices for himself. NO ONE, not even a caregiver, knows better then the patient themselves what they need. Sometimes we just have to listen. My daughter was sick last week, flu. In my caregivers mind I felt she needed to eat something, anything, and I was relentless with her. She finally raised her voice at me, which she never does, and told me that it was HER body and she wasn't hungry! She was right, how would I know if she was hungry?
It must be such a fine line to walk as a caregiver with someone that gets as sick as we do with radiation. Trying to know when to stand back and when to intervene for their own good. Good luck with it!
Minnie

I have to disagree with Amy just a little in that when dealing with a patient who is a spouse, there is an emotion factor involved and that is different from orders from a doctor who should be giving you direct instructions. People will invariably listen to a third party even though the spouse may have been saying the exact same thing.

Gary,

I agree 100% with your comment about a spouse listening to a 3rd party and have witnessed that first hand.

Vicki

Well as i mentioned earlier that we would,Robin and i sat and had our heart to heart about yesterdays visit.The worst problem is that he took an instant dislike to the oncology registrar that we saw who wasnt a doctor we had had contact with before.Rob likes his comfort zones and familiar faces are one of those.On occasions his dislikes and objections are unfounded but it is best to let him rant ,and then move on.I tried pointing out to him that this man sees hundreds of people a week going through radiotherapy ,and he knows the protocol like the back of his hand.He doesnt need to know Rob personally to know what is the best course of treatment.I tried to put it to him that he has two options.He can continue to work at his present level,not take the morphine, and suffer the pain as long as he can .Or he can take the morphine get a reasonable maintence level of pain relief and work slightly less.Doctor Bloomfield also said if he gets maintenance and control of his pain he may be able to try eating again.So he took the morphine twice yesterday and wasnt impressed.It gave him a headache ,and made him feel slow.But i have explained he will have to get used to it gradually,so.... so far so good.He is happily drinking the build up and fortisip but he is really mourning the fact that he cant eat.He said last night he enjoys his food ,and he misses it.So the regime is Morphine 10mg every 4 hours(can be every two hours),Paracetamol every 4 hours and Diclofenic three times a day.Asprin gargles three times a day,Difflam every 3 hours,Fortisip three times a day and Carnation Build up added in as well.On top of all this he has biotene products to use.His weight has dropped from 90- 85 kilos in a week wich i think is about 9 or 10 lbs so we are seeing the dietician again on Friday.Dr Bloomfield has told us that if we dont get this regime instigated he will be seriously ill and i think part of the problem for Robin is the feeling that it is all slipping out of his control.Still we will soldier on and it really is one day at a time now.

Liz - It is really difficult to know when to be tough or soft and at the same time let him know that what you are trying to do to help him is because you love him and really care about his recovery. Both Amy and Gary (and many others) have helped me and my son when we were going though the very difficult times. At one point, I did get tough and even yelled and said that he absolutely had to start cooperating and taking charge of his recovery and that I could not be the only one fighting this cancer beast! And then I left and cried all the way home. I also printed out several posted comments from Amy and Gary and everyone else and left them by his bedside to show him that it wasn't just me trying to tell him what to do. And that seemed to be the turning point. THings got better after that. I tried to find other ways, though to give him control over his life, like giving him choices i.e. "You want noodles with your chicken broth" or "do you think we should leave at 10am or 10:30am for your appointment", etc. If he is still working, that has got to be tough. I see now that my son being out of work at the time was really a blessing . He told me recently after getting back to work four weeks ago that he just could not have handled it if he had had to go to a job every day while he was in treatment. I'm glad Robin is "happily drinking" some liquids. When my son lost his taste, he seemed to get some satisfaction from really smelling the food. He said it was almost like being able to taste it. Liz, I think you are doing a tremendous job - stay strong and you will both get through this.